Wednesday, July 30, 2014

You may recall that I recently went to Los Angeles to see the premiere of a documentary that I was a part of. The film is call "Friends You Haven't Met Yet" and it was done by some computer science researchers at USC. The focus of the film is to get behind the statistics of people who blog frequently about their personal lives. I was one of several people they interviewed for the film.

The trip to LA was hilarious, I even got to walk the red carpet with the filmmaker and Chris Weinberg, the guy who interviewed me. None of the other bloggers were able to go, so I was the representative for all. You can read all about that trip and check out the pictures here: Maggie World: Mr. DeMille, I'm ready for my close up

Many of you have asked about seeing the film and I've been waiting for a DVD or something, and finally I can share it with everyone. They put it on YouTube! It's about 17 minutes long.

Friday, July 25, 2014

The conference I attended in Boston was interesting. It involves way to get families more involved in and welcomed into the medical decision making process involving their children, and in the case of those who are able, getting the patients themselves involved. It was a conference of mostly doctors with nursing administration and one bedside nurse there as well as about four family representatives (I was one of those). The fact that families are even included in this process is a good sign of thing to come. It is a culture shift for many medical providers and for many families as well.

One of the many things that came out of this was that medical personnel need to avoid the use of medical jargon when dealing with families. I wholeheartedly agree with this. Things like acronyms and abbreviations of medical terms tend to exclude those who don't understand the reference. Medical terms are necessary, but the jargon that accompanies them is not.

One presenter also warned against the use of "numeracy." I had to ask the woman next to me what that meant. It is defined as "the ability to understand and work with numbers," and from context I understood it to mean that medical people need to stop communicating in numbers when speaking to families. The whole idea of including families is to open the two way lines of communication and using stats and numbers can preclude that. Many folks cannot comprehend the numeracy and therefor lose the message being conveyed and cannot ask relevant questions etc, which shuts down meaningful communication.

I smiled to myself because I remember calling a doctor out on this- even though I didn't know what it was called - very early in Maggie's life. During her course in the NICU ( oops, that's jargon right there, that's the Neonatal intensive care unit) the doctors were trying to convey Maggie's situation. While I don't remember the numbers specifically, the conversations went something like this.

"only 1 in 100,000 babies are born with this, but of that .01%, 3/5 will have XXX complication. (Maggie had it). Of those with XXX, 2/3 will have YYY complication (Maggie had it) of those with YYY, 1 in 7 will have ZZZ complication. (Maggie had it)
I was completely lost after the first statistic and told him to stop. I said, " I do NOT care how many people DON'T have this. I get it, it's rare. She's the 1, She's ALWAYS the one. I'm going to buy her a lotto ticket because she's ALWAYS the one. I just want to know what the plan is to deal with it."

I shut down the numbers game and focused back on straight communication, mostly because I needed to understand. Seems I was just 20 years ahead of my time.

Monday, July 21, 2014

I find myself 3000 miles from home in a hotel room in Brookline Massachusetts. I am attending a conference at Boston Children's Hospital on patient communication as a family representative. It is very interesting and I am impressed that they want the voices of families at the table. And UCSF Benioff Children's Hospital invited ME who is not exactly a shrinking violet, they know I will have opinions and I'm not afraid to share them. Hence,I know they really want the family perspective.

I love Boston. I lived here for a year after college and considered staying. Then winter came the second time and I ran back to California with my tail between my legs. I've only been back twice since then, but this place energizes me. I arrived on the red eye early Saturday and stayed with my old friend Deborah. We had a whirlwind visit and today I attended day 1 of the conference. They used every minute of the day and I have dinner tonight so I am glad I came a day early. It should have been a week early. I wish I could stay longer but I'm on a flight back tomorrow

My search to find my place in my new world without Maggie continues. I know that wherever I land I want to use my experiences living in Maggie's World. This conference is a good opportunity to do that. Maybe this will help define things for me.

I hope so.

See you when I get back to "the coast" (an archaic term which is still better than "Cali")

Monday, July 14, 2014

Obviously there have been major changes in my life since Maggie passed away 5 months ago. I am still adjusting to all of them and suspect I will be in one manner or another for the rest of my life. After caring for someone 24/7 for 20 years, it’s difficult to simply switch gears. Caring for Maggie and/or managing her care is what I did, it’s who I was. Now I have to define myself differently and figure out where I fit in a world without her. It’s difficult and I am still floating down the river waiting to see where it takes me. Sooner or later I’m going to have to start kicking toward some shore, but I haven't figured out where to land.

The big changes are easier to keep at Bay because people understand those. Everyone gets that losing a child is a life altering event. Perhaps what people don’t understand are the thousands of little changes that we face every day. These are like painful little reminders of the loss and the big changes. The little ones are more personal - not in a private kind of way, but more individual. I might be the only one that notices them. Steve, Eddie and Tim undoubtedly have to deal with these too, but the little things are not always the same for all of us. If we are together and something hits us there are small smiles – and maybe a few tears - exchanged. But generally moments are experienced when we are alone and they are very personal to each individual. A song on the radio can be paralyzing, coming across one of her scarves in a bag is like finding a treasure (and I have 100 of them.)

This weekend it was the soap in the bathroom. I washed my hands in there and had to really pump the soap dispenser to get any soap on my hand. I thought “ok, time for a new soap in here.” Mundane and uneventful. And then I stopped. That is the first time I’ve had to change the soap bottle in Maggie’s bathroom since she passed away. I used to refill it at least every other day and sometimes daily.

I bought those giant soap refill bottles at Costco - like 6 or 8 at a time. That would last me about a month to six weeks. Between all the nurses’ hand washing, and equipment cleaning and Maggie’s bed baths, that tiny sink in Maggie’s bathroom was going nonstop 24 hours a day and the soap would just disappear.

Now that bathroom is used much less. Much less. I changed that soap on February 15, the day she passed away and didn’t have to change it again until July 11. That’s about 150 days, or 75-90 refills I haven’t made.

Believe me I never minded using all that soap. Cleanliness was a key to keeping Maggie healthy. One of the nurses was a little unclear on this. No matter how many times I begged her not to, she often filled the soap dispenser with water in an attempt to stretch out the usable soap. That was aggravating; I would get a squirtful of bubbly water and have to stop mid hand washing to fill the dispenser with actual soap.

That aggravation is gone now. The nurses are gone, the tubes are gone and Maggie is gone.

A small change in the amount of soap we use triggered that entire line of thought, all as I stood there drying my hands.

It’s no wonder the big changes are taking longer. The little changes can be exhausting.

Thursday, July 10, 2014

Very weird day. In the space of just over an hour the following three things happened to me.

1) I was having a conversation with a lovely woman with a thick Jamaican accent when things got weird. When she learned about Maggie she suddenly had to share her philosophy about disability. It seems, according to her, that disability and any other "affliction" is the work of Satan. My father or his father or his grandfather or his grandfather (all men, which is interesting) did something bad and Satan uses that to cause affliction many generations later.

Wow. Wow. Wow.

This was more than I could handle. I really didn't want to debate the point, because I went from being charmed by this woman to being freaked out in a very short period of time.

I left and went to a lunch meeting which was lovely in every way.

2. When leaving the lunch meeting I was chatting and suddenly found myself staring at a woman walking up behind us. I couldn't believe my eyes. The woman was wearing a sweatshirt that I was sure said "Maggie McDonald." As she got closer I realized it actually said "Carnegie Mellon" and I had to somehow explain my distraction. (and Now I really want one of those sweatshirts)

Strange. Strange. Strange.

3. We walked about 10 feet and I saw a woman I knew many years ago when the boys were young. I run into her periodically, but it had been a while. She is odd and always has been. We exchanged pleasantries and she asked about the kids and I said they were good and I asked about hers etc. Then she said, "And how is Sara?" I paused and said, "Sara? Do you mean Maggie?" She said oh of course.

I felt my lunch partner put her hand on my back - a small gesture that I appreciated so so much. She literally had my back.

I paused again and said, "Actually Maggie passed away unexpectedly a few months ago." She was understandably shocked and said, "No one told me. Why didn't anyone tell me?"

I thought to myself, well, maybe that's because you thought her name was Sara. But I didn't say a word. I just excused myself quickly.

Wednesday, July 9, 2014

I have been fortunate enough to work with UCSF Benioff Children's Hospital over the last several years. This is the place Maggie received the majority of her medical care during her life. I know Maggie lived longer than many would have thought because we were fortunate enough to have excellent care from her pediatrician Dr. Aicardi and from the hospitalists and specialists at UCSF. People travel for many miles to get that medical care and we were so close we could walk there faster than others could find parking.

Now UCSF is moving down to Mission Bay. It won't be as close to our house, but it will serve the entire community with a free standing childrens' hospital as well as a cancer and women's hospital and an outpatient center. It is the fir
st new hospital in San Francisco in many many years - in fact I cannot remember the last one. The building will be completed in just a few weeks and the hospital will open February 1.

To celebrate the completion of the building, UCSF Medical Center is having a 5K hardhat walk and lights on celebration on September 6. And you can all join in if you want to. I just created a team for the walk which is named Remembering Maggie McDonald. Here's the website. http://ucsfhardhatwalk.com/teampage.asp?fundid=754#.U73PHfldWnZ

Register to join our team if you can - it's $25 - or just make a donation. Let me know if you want to walk, so we can all meet and walk together.

Tuesday, July 8, 2014

I am sad that Brisco died. I loved that dog. He was a part of the family.

But he was a dog.

It does not compare in any way, shape or form to losing a child. And those of you who think otherwise are simply wrong. If you don't have children you can't possibly understand. If you do have children and you are still making the comparison there is something really wrong.

I actually am in a position to speak on this subject because I have experienced both losses in a span of 5 months.

Monday, July 7, 2014

Brisco and Maggie are reunited. Brisco the wonder dog died last night. We lost him last night very suddenly and without warning. At 16 he was old, very old, so we knew he didn't have a whole lot of time left; but he was begging for steak from the table one second and down the next. He had a seizure that lasted for the entire 20 minutes it took to digest what was happening, load him into the car and get him to the emergency vet. We knew it was grim and the vet confirmed that. The whole thing was over in less than an hour.

We sadly returned home and sat back down at the table and reminisced. I noted that the mailmen, raccoons and skunks of the Richmond district were going to sleep a little better now. Brisco County Jr., the great watch dog, always with one ear up and the other down, was off duty.

There are too many stories to share but the way Brisco was with Maggie was the most amazing thing. Maggie was 4 years old when we got Brisco and she spent a lot of time on the floor in those days. (It took a long time before she could tolerate being in the wheelchair for long stretches and this was before her skillful dynavox days.) She could sort of move around on the floor, propelling herself on her side using her legs. She was like a swimmer without water. If my purse was on the floor she would get to it and fling everything hither and yon. Newspapers left behind were quickly shredded to bits. This picture is from 2008.

We quickly learned to pick things up to avoid the mischief. But Brisco was always there. And Maggie would get to him - or he would just lie next to her - and the ear, tail and fur pulling would commence. Brisco just sat there and let her do whatever she wanted. If the boys were nearby and tried the same thing, Brisco would have none of it, but Maggie had free reign. This picture is probably from about 2000 or 2001.

Brisco was very protective of Maggie. When someone new entered the house Brisco would casually stand between the visitor and Maggie. If they stayed, he would lay down next to Maggie. He wasn't threatening in a teeth baring or growling kind of way; he was more like the dad of a teenage girl and the visitor was the hapless date.

Brisco was the fastest dog in the park up until he was 10 or 11. Then he wasn't interested in chasing other dogs, he just became something of an elder statesman -- unless Maggie was with us, then he was at her side. And when he was on leash, which wasn't very often until his hearing started to go, he would let Maggie yank and drop the leash and he would be so so patient.

Brisco missed Maggie these last months. The night before she died when she had been taken by ambulance to the hospital, Brisco sat right in front of the door to her room as if standing guard over her in abstentia. He slept there for several nights. I finally moved his bed into the dining room right next to the door to her room.

Now they are together again. He is young and healthy and fast, she is able bodied and verbal. Maggie is telling him how much she loved him, but he already knew. He's just happy to be with her again.

Thanks Brisco. You were the greatest dog in the world and we were lucky to have you. A wonder dog for the ages. Take care of Mag for us.

Sunday, July 6, 2014

The house I live in is 92 years old and we are only the third owners. The owner before us was my grandmother, she owned it from 1955 until she died in January 1987. We bought the house after she died and have been here ever since. All three kids were born and grew up while we lived in this house. Maggie never knew any other home.

Periodically I am reminded of all that history. The trigger can be anything. Today it was peaches.

I went out on the deck while the coffee was brewing and noticed peaches growing on our tree. This is San Francisco, not Georgia or even the Central Valley of California. It amazes me that we can grow peaches with the lack of heat we have. They are not good eating peaches because they lack sweetness that the sun would bring, but add some sugar and bake and they are delicious. There aren't very many, mind you, maybe 9 or 10, but that's more than enough for a cobbler or two.

When I see the peaches I think of my grandmother. She could grow anything, anywhere, anytime. I am pretty sure that peach tree was her doing. And I wouldn't be surprised if it came to be simply because she threw a pit out the window into her garden. When I imagine the trajectory of her throw, the tree is in just about the right spot for that. And if anyone could make that work it would be her.

In my grandmothers last several years, she moved into what was designed to be the breakfast room. It is a sunny room in the back of the house overlooking the garden. And it really WAS a garden when she was here; there were flowers and vegetables everywhere. Grandma loved to look out the back window until her dying day at age 97.

Years later, when it became too difficult to carry Maggie upstairs to the bedrooms, we put her in that same breakfast room. We also added a deck off the back of the house opening to her room. The elevator was outside and brought her up to the deck so she could roll right into her room. She couldn't really look at the garden (not that there was much of one anymore) but she could hang out on the deck when it was nice.

I was often struck by the unlikely and very similar use that room had for my grandmother and my daughter.

Now we have to decide what to do with it.

Right now it is a sunny room with only a single chair and Maggie's dresser and bookcase in it. The single chair was the nurse's seat.We gave her bed to another child who could make use of Steve's ingenious design. Because of changes we made to accommodate Maggie it doesn't really work as a breakfast room anymore. The direct connection to the kitchen is no longer there. We have considered a family room, something this old house lacks. But now it's just Steve and I and we really don't need it. Perhaps an office, but I don't want to see all the paper and clutter all the time. The room is the access to the deck and the backyard and the only downstairs bathroom is in that room, so it will have a lot of traffic. There are lots of ideas, but really we haven't done a single thing to move any of these ideas forward.

Saturday, July 5, 2014

I am really sore today. I spent the 4th of July day working at my father in laws house packing and moving things so that Russ, Steve's cousin in law can spruce it up to sell. I suspect the house will sell quickly, especially with the facelift. That was at least my fourth trip out there and it is incredibly tiring, physically and emotionally, and I am feeling the effects today.

We just have so much on our plates this year.

I slept in the car as Steve drove us home late in the afternoon. Once we arrived I took a much needed shower, made dinner and then fell asleep about five separate times while watching TV. At 8:30 PM I was awake again and Steve asked me to go watch the San Francisco fireworks show that started at 9:30. Sure. We can't just sit here relaxing, can we?

We drove down toward the Marina, not daring to get too close to Aquatic park and Pier 39 where they were shooting them. Our target was the Marina Green, about a mile or so away. We knew it would be difficult or impossible to park near the water, so we parked just outside the Presidio and walked about a mile to the St Francis Yacht Club, just behind Marina Green. (I complained every step of the way. I know, delightful, right?) We arrived there about 9:15 and found dozens of parking places. Who knew? Oh well.

We wondered if we would see anything because the fog was in, but it wasn't hugging the water, so hope sprang eternal. It was so beautiful down there. We were just below the Golden Gate Bridge, but it was shrouded in fog and barely visible.

We could see the fireworks from Sausalito/Tiburon across the Bay in Marin. There was no fog over there. It was strange. we could see the end of the layer of fog even though we were standing in it. I took this picture with my phone, but it was hard to capture.

Then the San Francisco show started. You could basically see the bottom half of the fireworks from our vantage point. The top was lost in the fog. (I suspect those at Aquatic park got a full view, though) It was kind of cool, but there is a lot of watching the fog change color.

We chatted with a man who held his daughter as she slept on his shoulder. I missed Maggie alot as I watched them, like an aching longing. That made me smile in spite of things because I never took her down there for the fireworks. It was too cold (low 50's last night with the wind bowing hard) too late and too crowded. Still, I missed her and I wondered if I was too protective of her. I dismissed that thought pretty quickly and smiled remembering us making a flag cake and watching the fireworks on television together. I kind of missed that too.

Fireworks over, we walked back to the car and went right past the Palace of Fine arts, which is simply beautiful day or night - but especially at night. It kind of put the fireworks to shame. (and it kept me from complaining on the walk back)

We were home before 11 and I climbed into bed and fell sound asleep, tired from a long day of activity. I woke up this morning and realized another holiday has come and gone.

I guess that's what ths year will be, just checking them off and remembering.

Tuesday, July 1, 2014

Finally I had a dream about Maggie. I've been waiting for it. Others have told me they have had dreams of her and she was running and free from wheelchairs and restraints, but I hadn't had a single one. On Sunday night I did. It was just a moment and she and I waved at each other across some distance. She seemed to be behind some glass yet we were both outside. Very dreamlike (or I am actually part of the show Under the Dome.)

It made me both happy and sad. Happy because it seemed to tell me she was OK, but sad because I knew I couldn't get there. OK, as I type this, it's more sad than happy.

In a strange way, I have to credit my friend George with this even though George and Maggie never met. I've known George since 1980 when we worked together for a couple of years. We stayed in touch because George is hilarious and makes the effort with all of his friends. It was an occasional phone call or lunch but we were in touch. In the past few years we reconnected and talked often because he worked with Steve's cousin Sharon. He read the blog and made hilarious comments on every part of my life. I talked to him on June 3 and we were going to have lunch the following week before he went up to watch his son graduate from college. The lunch didn't happen because George dropped dead on June 4 while doing his favorite thing in the world - playing golf, I was stunned and shocked when I heard the news from his sister.

Sunday there was a celebration of George's life and many of his friends and family shared stories of George. The stories were all different, but George was the same person to all the people in his life, friendly, funny, thoughtful and a practical joker. He was a delightful guy and everyone was so sad to lose him, but so happy to have been part of his life. One of his cousins talked about him reuniting with his parents and other family members in Heaven. It was sweet.

Obviously, funerals are not easy for anyone, but they are particularly difficult for me this year. I feel the loss of Maggie all over again and it makes me incredibly sad. As I stood in the back of the room listening, his cousin's words hit me. I wondered if George and Maggie would finally meet. In my sadness, I felt a small smile creep along my face. George and Maggie would get along famously.

I've often thought about Maggie in the care of Steve's mom and my dad who greeted her when she arrived. I've thought about all the friends that Maggie lost who were waiting for her - and Maggie sneaking away from her two grandparents to hang with them. But now thinking about her meeting George and hearing the stories I know he would share brought in another dimension. From her vantage point she knows my entire life, not just my life as her mom. It was a nice realization, even though she knows all my secrets, and I think it opened the door to allow me to dream of her.

I look forward to more dreams of Maggie. If I see her on a golf course I will know how that door finally opened. George and Maggie wedged it open when the angels were in choir practice.

___________
The title of this blog is the title of a wonderful but incredibly sad song by Eric Clapton Too sad to share because I felt uplifted by this post and don't want to go back down.